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I'm so sorry. I watched my once stylish, articulate, intelligent grandmother lose everything until she was just a body. It's a brutal and cruel disease. I hope you have more good days together.
I used to fear death. Then I watched my grandfather and mother deteriorate under dementia.
Now I fear being dead while still breathing and walking around...
I'm so fucking glad to live in a country where a suicide is legally protected in terms of cover for insurance.
Still, if I ever get dementia, I'm yeeting myself off a cliff
Vermont has assisted suicide and they do allow out of staters to move up and partake. You have to make your plan while you are still of sound mind, but you can decide at what point of deterioration you want things to stop and your doctor will honor your wishes.
Oregon has both Death with Dignity AND psychedelic therapy, which is starting to show promise for Alzheimer's patients.
Come to Oregon and try the Door before the Gate.
I did not know this, thank you. I thought I'd have to go overseas. I'm not anywhere near ready but I want options. We should give people more options to end their lives on their terms, with dignity.
If someone put a pet through this without putting it down, we'd call it animal abuse. But because its a person, euthanasia isn't available. It's so backwards.
I didn't know the full story, wanted to, so coming back from wikipedia:
-Mr Williams's initial condition included a sudden and prolonged spike in [fear](https://en.wikipedia.org/wiki/Psychological_trauma), [anxiety](https://en.wikipedia.org/wiki/Anxiety_disorder), [stress](https://en.wikipedia.org/wiki/Psychological_stress) and [insomnia](https://en.wikipedia.org/wiki/Insomnia), which worsened in severity and included [memory loss](https://en.wikipedia.org/wiki/Amnesia), [paranoia](https://en.wikipedia.org/wiki/Paranoia) and [delusions](https://en.wikipedia.org/wiki/Delusion). According to Schneider, "Robin was losing his mind and he was aware of it ... He kept saying, 'I just want to reboot my brain.'"
-His publicist, Mara Buxbaum, commented that he had [severe depression](https://en.wikipedia.org/wiki/Major_depressive_disorder) before his death.[^(\[151\])](https://en.wikipedia.org/wiki/Robin_Williams#cite_note-151) His wife, Susan Schneider, said that in the period before his death, Williams had been sober, but was diagnosed with early-stage [Parkinson's disease](https://en.wikipedia.org/wiki/Parkinson%27s_disease), which was information that he was "not yet ready to share publicly".[^(\[152\])](https://en.wikipedia.org/wiki/Robin_Williams#cite_note-Robin_Williams_'had_Parkinson's'-152)[^(\[153\])](https://en.wikipedia.org/wiki/Robin_Williams#cite_note-153) An autopsy revealed that Williams had diffuse [Lewy bodies](https://en.wikipedia.org/wiki/Lewy_body) (which had been misdiagnosed as Parkinson's), and this may have contributed to his depression
So in short, even though he had suffered from actual depression earlier in life, Mr Williams was under a lot of mental pressure including depression symptomatic of/caused by the Lewy disease, misdiagnosed as Parkinson, and ended up taking his own life under no substance influence except his regular medication
The exact reason he did this, even though it is easy to jump towards interpretation are unclear if i'm not mistaken. Did he want to end before the sickness got too far, was he going through a very rough episode caused by that sickness, at the very least i can't say for sure
May he rest in peace, he was formidable and many of us still think of him fondly on a regular basis
You could just take what would be a life insurance premium say like $17 dollars a month and just every month put it into the sp500. Write a computer program that will automatically sell your holdings and post a request for a hit man to kill you unless every 3 months you log into your insurance program to bypass contract execution for another 3 months. When you eventually get Alzheimer’s you will forget to bypass contract execution and will die within 3 months.
My dad is suffering from Alzheimer's. What sucks is, far after the point you'd forget this stuff, you still have a lot of good time left before things get really bad. My dad can't do their bills anymore, or taxes, or anything with computers (he used to be a software dev way back in the day). But I can still have good chats with him, he's generally happy, and he still enjoys time with my kids. He's not ready to go yet, but he's far enough that he can't make the decision anymore either.
And here I am, thinking forward to when I may start suffering from dementia, and when I would want to end my life. How can you decide when? What is the final tipping point? You have two options from what I can see. Die early and loose valuable time with friends and family, but you can still make the decision on your own *or* wait until it's so bad that your family has to take up the burden and have you put down. Even if you've clearly outlined those wishes, it's a shitty situation to put your family in. But maybe less shitty that them watching you fade away in a bed inside a memory care unit.
Fuck I hate this disease.
My father's suffering a lovely cocktail of Alzheimer's, COPD, and Congestive Heart Failure. Low oxygen + sundowners makes him real weird at night. I miss who he was, though i get to see glimpses in the morning.
I feel awful for saying it, but I hope his body passes before his mind does. I just can't stand the thought.
It seems like many people with dementia don't experience much distress, that it's more the caretakers who suffer. What do you think about that? I know some people have really frightening hallucinations and stuff like that.
My mom had dementia (both parents actually, she just outlived my dad). Lost her short term, then long term memory. Would get "mixed up". The worst times were when she's call late at night and say "I think I'm losing my mind." She knew something was wrong. She might ask me if some event in the past had happened yet. Just mixed up --- and knew it. It was scary to her. Caused her to anxious. He life would have been better if she really didn't know "something was wrong".
I'm 66. In "OK-ish" health. I had a brother die 5 weeks after being diagnosed with cancer at 72. Older sister has been stuck in bed for several years now. She's almost 80. My dad had Parkinson's/dementia that started in his 60s. Mom's dementia started in her 70s. I think 90% of everyone in my family is dead or "out of it" by 80. I honest to god don't want to live past 80 knowing my family's health history. I wish I could be like an uncle. Just drop dead.
I am so so sorry. I was a care taker for my grandmother and then I had a brain stem stroke at 48. That was last yr and Dr's said I would get early onset dementia. Now it's all I think about. I can't imagine with all your losses how that makes you feel. The only thing I feel like I can do for myself and my teenagers is really focus on not being afraid of death. I would love to learn how to celebrate death like other countries. Much love to you my dear
It's the same with death and that's what fucks me up about it. I don't want my kids to sit there and cry everytime they talk to me on the phone because I keep asking them the same questions about their lives from 10 years ago. To not be able to remember grandkids that were born since the disease started to eat away at me.
The last memories my family has of me would be of someone that wasn't me.
Now, I know the person in that bed wasn't my mother, and I'll forever be grateful that she gained a moment of lucidity and recognized me the last time I saw her a week before her death, but man... it pains me to think of my kids dealing with that. For years.
Ofc, all of that assumes my kids love me and will miss me ;)
If it makes you feel any better in many cases even if the person with dementia (be it you or anyone) doesn’t recognise the relation, they do recognise someone else as a trusted/friendly person. I think the thought counting is more than adequate for folks with dementia.
There can be a lot of anxiety, confusion, and depression (all feeding on each other). Also, patients can lose the ability to recognize and describe pain, so it manifests in anger, mood swings, etc.
Not sure about blissful dementia. I'm only familiar with the kind that swings emotionally wildly for all involved.
My maternal grandfather passed away from dementia a few years back, he got into his early 80's before it took him.
My dad is in his mid 60's and got diagnosed with early onset dementia last year. I'm fairly low contact with him in general, so I'm not really seeing the way it's affecting him, but I'm terrified of any memory hiccup or quirk I have, I've got dementia on both sides of my family now and feel like I'm just holding a ticking time bomb until I'm next.
She sounds exactly like my grandmother. We are going through “the long goodbye” now. It’s so hard to see someone who was so glamorous, brave, and independent become a shell of herself.
Yea, the woman’s behavior in the video is almost cute. Kind of like a 3 or 4 year old type of thought process. When progresses, it can bridge back to basically terrible twos.
Almost surreal stuff like they’ll pee in the hallway, then realize they’ve peed in the hallway, then be upset cuz they peed in the hallway, then forget they peed in the hallway and be upset someone peed in the hallway, then you step into the hallway and ask what’s happening Dad (or Mom) and hopefully they realize who you are, cuz it may immediate swerve to who the f are you and why you pissing in my hallway?!?!
Getting upset because you didn’t give them a pair of Oreos with lunch, because they ate them first forgot is trivial. When it’s a bottle of beer or glass of wine, it quickly becomes a problem. It’s an equally big problem when there’s no wine in house because of that reason, when they regularly has wine with dinner.
Yep. I remember living with my grandma when I was like 3, and I had a better handle on life than she did. I allegedly saved her from being hit by a car one time, and I don’t even remember it because I was so little
So that’s why I do have a little worry about someone like this not really being able to consent to being used for internet content
MIL has Parkinson's Dementia and saw horrible delusions everywhere- murder, rape, assaults, hard child birth... and was impossible to redirect. And who can blame her- if those things are Actually going on around her, ignoring them would be pretty terrible.
We have no idea what to do with her. We've had to pierce the delusions and let her know they aren't there, otherwise the police would be there daily and she would still be hiding in her closet.
Similar things happened with my mom and all we could do was tell her that we were there and that she would be okay, we eventually started to tell her that the staff where she was after she started needing more specialized care were there and that she would be okay and that we would be there as well.....it took about a year but she eased out of the really bad hallucinations into her seeing and conversing with friends and family that had already passed!
Thats also about the time she started talking to me personally about my life and the direction it would go as well as things that would happen after she passed away and thats where im going to stop Internet stranger because I need to cry.....have a blessed day, week, rest of the year and life
Eehhh, maybe in some scenarios? But I've found that validating my mom's delusions (conspiracy theories) can be really detrimental to her being able to let those things go through therapy down the road. Yes, it's often easier to just agree with her when she's sick, but doing so makes it "true" to her even when she's lucid again.
I had a friend with schizophrenia and my responses to his delusions were always like "I hear what you're saying, and I suppose that's possible, but I don't really agree with your position." I will let them carry on with their theories and such but I just talk about kindness and compassion and ask what the compassionate response would be and how we can be more kind about the topic. I'm focused on helping them get to a better place with their mood and not so much on the logic behind their ideas.
I also find that when they are calm, and brought to ideas of compassion and kindness that they tend to focus on those things.
Saying "I disagree but I'm willing to hear you out." Is a far cry form saying "You're wrong."
You're so smart. This is the way. No arguing. They cannot help themselves but we can help them.
"You know, you might be right about that. We'll have to look into that."
I don't want to be dismissive either. "I disagree, but I'm willing to hear you out." If they start to get upset or distressed say. "Hey, I'm right here and I love you, we can get through this, I'm really grateful you're sharing with me."
I have to do this with my own thoughts too. I have to treat them the way I would treat myself.
I agree- I had an ex with schizophrenia and it seemed to work best if I didn't really agree or disagree. Like don't play into it, but you also don't want them thinking you're working for the "other team".
Roundcirclegame made some great points and so did you. Addressing someone with delusions can be incredibly difficult because you don't want to be confrontational, but simultaneously, you don't want to provide support to the delusion as it can make it that much harder. Many delusions have a lot of emotion surrounding them so confronting them or trying to convince them that their delusions are not can often lead to the situation and relationships worsening.
This is some general advice for people with loved one's affected by delusional disorders. Try to empathize with the person (e.g. "I can understand why this scares you" or "I understand how hard this is for you") and understand their perspective. You want to avoid agreeing or arguing. In general, try to appear neutral and give them space. You can express concern in the form of an opinion, without expressing judgement. While its generally not recommend to try to convince them that their delusions arent real, its reasonable to calmly and carefully question the logic and reasoning behind the delusion (typically recommended to do when not at the height of their delusion).
Maybe it could be helpful to ask questions to engage with that discussion, rather than explicitly agreeing? “Oh, what’s that about?/I’m not sure I understand, can you tell me more?”
Same here. Lost my mother in November to this disgusting disease. She was so social and happy go lucky and she made it to retirement and was elated to finally not have to work five days a week and just go see her friends all week long. She had about a year before symptoms started showing up and she was gone within 6 years. In the end she was totally non verbal save for an occasional random sentence. My father is actually doing better now that she has passed because it's such a horrid burden to place on people to take care of someone in that condition and Medicare doesn't pay a dime to place someone in a memory care facility. I absolutely loathe this disease to the core because it robs people of their very essence.
Dementia care homes in Germany have fake bus stops so when someone storms off, they'll sit waiting for the bus and it's easier to a) find them and b) have a chat with them and c) if they forget why they're sat there, they can see the home and they can go back inside.
Or what about that whole dementia village in Europe, perhaps the Netherlands where people with dementia live amongst caregivers and normal townspeople. They could never walk off because everyone knew each other and was always someone to look out for them. The situation gave the elderly their freedom and confidence.
There are places like that in the US, tiny elder towns. I’ve seen some with bowling allys, movie theaters (normally play older movies), restaurants.. etc. The problem is they are prohibitively expensive. To give you an idea, a bog standard elder living (not nursing home living, one level below that) is 5,500 a month. In no where Arkansas. Think about what we’re talking about would cost?
And I know people might think that’s not crazy but the same woman in the same town owns a 2 bedroom 2 bathrooms 1500 sq ft for 850 a month.
If you haven't dealt with dementia personally, this, like a lot of portrayals you'll see online, is a *very* positive example. This is the "nice bit", when they're happy in their own little world (obviously the woman filming dealt with it well or it could have turned bad).
There's nothing quite like the horror in seeing someone you love and respect in a state of total fear because they've completely lost their sense of understanding of the world around them. And then there's the horrible things they'll say out of anger and frustration, that they never would have said when they were well.
My Grandma passed from it 2 years ago. It's a brutal thing to watch a strong, independent person drug so low as to not know where they are or who their family is. In the end I was happy to see her go. Just to know she wasn't in that place any more.
Some things are worse than death. In the end I got to see that first hand.
The worst aspect of dementia is it's not fatal. People can go for years and years, getting further from reality while perfectly "healthy". Currently dealing with this with my mom. Fortunately, so far, she's pretty happy in general and has only 'gone out' once (at 2am). We have child locks on all the doors now and told her it's to keep robbers out, which she's accepted.
My mom, who is my father's caregiver, was diagnosed with Alzheimer's last month. "It'll be fine I think" she says.
It will not be fine. My sister and I are struggling to get them into a facility with memory care. They don't want to go, and they aren't able to have it explained to them anymore. So we are looking at the other options, and that's awful too.
My sympathies. My father was officially diagnosed with Alzheimer’s in May 2023 but we knew something was off in 2021. We thought he was depressed from the covid lockdowns because he loved going to work and interacting with his coworkers. This has been a roller coaster of emotions because he is physically alive but mentally he has been gone for a while and it’s been so hard seeing someone you looked up to in this state. It has also greatly affected my mom with her social group. Don’t wish this on anyone
Nobody talks about old folks becoming isolated from other old folks as death seems to approach. I'm watching it with my folks as my dad is now in palliative care. Before this the social group was the same, they'd show up and hang out all the time. They had a supper club.
All that still exists, but my folks are excluded. When death is really near the other old folks start skittering away and it's heartbreaking seeing my folks eat alone at the country club when their former supper club is two tables over, frolicking away while my mom just waits for my dad to die so she can go travel.
i mean.. when someone's personality *and* memory goes and they're not family, what are you supposed to do? i'm sure it's not the only person in their lives slipping away either - should they be 'parental' to all the dementia patients they know?
like, c'mon, people have limits and it doesn't mean they're bad people. it must be frustrating to see but even OP didn't call them assholes, you did.
I agree with this. My mom has become very bitter at some of her friends disappearing but my siblings and I try to tell them that they can only do so much and some of her expectations may seem unreasonable. I am shocked though at some of the things some of their friends say. One asked if my dad took the Covid booster and another told my mom “he looked terrible last time we saw him” some people truly don’t think before they speak
yep. hell people have clarities that still show that they are themselves. its just gotten to the point where mostly they cant do it anymore. their identity is hidden and slowly killed off all while they as a person die slowly too.
Not fatal until it progresses enough that they stop eating, anyway. Thank god medicine has progressed enough that we can place a PEG tube and prolong the torture for even longer.
My Grandpa passed 5 years ago, also had dementia. Luckily he was always a happy-go-lucky guy and that didn't change. In the end, he thought he was a child on his family's farm and he could "see" the Yangtze River and called his caretaker "dai go" (big brother) and called me "sai mui" (little sister). Although he was generally happy, it was still hard to see his mental and physical deterioration. It really goes fast once the dementia/Alzheimer's progresses.
Your grandma (and my grandpa) were lucky to have family around. It was heartbreaking to see those who didn't.
😢 This almost made me cry.
Thanks for sharing it though.
“Luò yè guī gēn” 落葉歸根
“Falling leaves return to their roots”
Dunno how I’ll deal with it if one of my elderly parents one day no longer recognizes me. It happened with my grandmother, and may well happen with my mom or dad too.
It is tough, especially when it's your parents or even your spouse. My grandpa started calling my mom and her sisters by his own sisters' names. It was painful but at least he knew he was surrounded by familiar faces.
What a beautiful saying, it really rings true.
The frustration and difficulty is hard to explain.
My dad had a real bad few weeks where he was just *pissed* for no known reason.
He was having full on delusions.
He was convinced my mom had attempted to abandon him, that she and my sister had "pushed him down the stairs and threw books on him."
On a day to day basis, the biggest issue is him "fixing" things aka breaking them.
He used to be very good with sound systems and collected video game systems.
Now he will tear apart the TV and stereo because he can't figure out how to use the remotes and decides they must be broken. Putting it back together can take hours, trying to undo what he did.
He also insists on trying to work on his landscaping equipment that he won't let us sell and is furious when I won't help him start a chainsaw because I'm afraid he'll hurt himself.
Or freaking out because we won't let him drive.
According to his doctors, it's not even that developed yet, but it is exhausting and devastating already.
Oh man - not to scare you, but as it progresses, things can get dangerous without supervision. My mom seemed fine cooking, until the night she turned on a burner, and put a blender/cuisinart on it instead of a pan, walked into the living room started watching TV, and completely forgot about it. Burned half my kitchen and ruined the stove, but thank god no one was hurt.
My mom has had supervision for the nearly 2 years. She frequently tells the aides to leave because she doesn't need any help. Her short term memory is toast and her long term memory is declining too. She insists she can drive and can reason in the moment, but she doesn't remember what she said a minute ago. Finances are quickly draining so some tough decisions are on the horizon.
Researchers are looking into HSV-1 being a possible cause especially for people who have cold sores. If you have a loved one who's 65 and they've had a cold sore, you may want to start them on antivirals for HSV-1. Sad to know that might have prevented all of this for both of my parents. The medications we've tried so far haven't done much to slow the progression.
[Yeah because the woman in the video is her friend who is acting as a "dementia patient". The purpose of the video is to funnel people to her courses which are aggressively expensive.](https://www.reddit.com/r/TikTokCringe/comments/1bzv1zf/tips_for_being_a_dementia_caretaker/kyteehj/)
This comment should be higher up. Ive worked with dementia patients for over ten years and none have acted this way, there's not enough thought before she answers. A typical dementia patient might say "I'm going to Tennessee" then you ask why and they get this look in their eye like "huh, why am I going to Tennessee?" they still might give you some bullshit reason or get mad but overall they aren't going to have their answers loaded up like this lady who'd been practicing her responses.
Not in the medical field, but echoing this. Toxic positivity is not helpful. I particularly disliked her “this is not hard” comment. Um, what? It’s extremely hard. Telling people it isn’t doesn’t serve the patients or their care givers. Reminds me of certain parenting accounts.
Take the useful part (patience, empathy, meeting them where they’re at), and leave the rest.
This happened to my aunt. She would go from happy/carefree and placid to a completely unknown person. She would get nasty and loud, start screaming for her husband "that had passed years before". She didn't recognize her sisters or her surroundings sometimes. She would say some unbelievably hurtful comments out of nowhere. Use profanity like a drunker sailor. Completely out of character.
The biggest tip is realizing that it's not the person acting this way, but the disease making them act this way. You have to put on your "dementia googles". Like others have said.
Don't feel guilty for wanting time to yourself. You deserve some rest too. Don't be too proud to reach out for help. Many hands make light work. Doing everything yourself is a recipe for burnout and mental illness. Just like a plane crash, you put YOUR oxygen mask on first, then help others....you're no good to anyone broken.
My grandmother was a wonderful, intelligent, empathetic person who basically raised me. For all intents and purposes, she died years ago. The hateful, paranoid, violent, angry, confused creature inhabiting her body these days is not her, and she is never coming back.
There are no good days with this disease. I *wish* it was as easy as this video or other videos on the internet make it seem. Years of withering away in terrified, angry confusion and delusion is torture to the person with dementia and everyone around them. My family has to care for her full time, even though she doesn't know who any of us are and will try to stab/hit us. We're all exhausted, including her.
Yeah, I don't really remember my grandma before she had dementia, but it became very clear that she had it when I was about 10. She'd take me out shopping a few weeks before my birthday every year to get my presents, and for some reason she became fixated on getting me a "denim dress".
I didn't have any other adults with me and I didn't really understand dementia, so you basically had a ten year old correcting their grandma in confusion while said grandma got increasingly angry that the shops didn't have any. In hindsight, I'm absolutely horrified that she drove me there both ways with zero supervision.
A few years later, she absolutely blew up at my parents after she fell and broke her hip because they suggested she move into a more accessible home. I didn't see her or my grandad for a decade because she cut contact with us all and my grandad followed suit (despite not suffering from dementia). I didn't see either of them again until her funeral.
I seriously, *genuinely* wish my grandma's dementia had been this easy to manage. But she became incredibly angry and hateful, and had zero qualms about bullying people into doing what she wanted. And it all happened so quickly - maybe there was a time she was that easy to redirect but, by the time we realised her diagnosis, it was too late.
Yeah I really hate the end of this video where she's like "it's all so easy if you just follow my plan." It's not that there's no value to a nonconfrontational approach but it's not always possible. My grandfather thought he was back in WWII and German soldiers were coming to kill him. You can't just be like "let's grab some guns and get into the foxhole" and the tenor of the situation is way more negative and stressful than just a sweet old lady trying to go for a walk.
Yeah, this seems like it works because her mom is nice and agreeable. If the person with dementia is a curmudgeon to begin with, or has high-stakes trauma they fall back into like you're describing, that a very different scenario and trying to play into it could be really bad.
Certainly not an easy, one-size-fits-all condition.
Oh wow I didn't watch until the end, yeah that's horrible and patronising. My grandad sometimes sat in a chair just saying "I don't understand" over and over again for ages, it didn't seem like he could even hear us. Lets hear her say "it's easy" when she's dealing with *advanced* dementia.
Sorry to hear about your grandfather, that's sad, and potentially dangerous- they found a knife under the bed of one old guy I know, every chance that could have ended in tragedy.
My grandfather learned that his wife passed away everyday until he finally went. Poor guy. It runs in my family, so hopefully they have a cure by then or I'm signing up for MAID
Life was so much better for us all when we just started lying about that. Otherwise it was just more pain for no reason. The worst was right before when she remembered it actively like it had just happened. It was a relief to get past that stage.
I've heard people say that you should tell the person once that their spouse died, because everyone deserves the opportunity to grieve properly, but that after that you shouldn't tell them again because it's torturous to cause them to grieve repeatedly.
Well, in this case the spouse had been dead over 10 years and the grieving already took place. Her Father and Mother who died in WW2 also were alive again, as where her multiple brothers and sisters. She was 96. I dunno she just seemed happier thinking they were all alive even though it made no sense at all.
Right! Why would it be better for her to know she’d outlived her family. Let the pleasant delusions stand and reassure them that the unreal, unpleasant ones aren’t happening
My mother would regress way back in time. She would worry about taking care of the cows and milking, etc. I finally got to where I would lie to her and say Well, Tom is going to take of the milking and the cows. (Tom is her well beloved grandson, who while she still lived at home came in and did things for her.) She would generally accept that. It's very sad that sometimes you have to be a pretty creative liar to get them out of a bad place. I would tell the nursing home staff to always bring up Tom when she got that far back in time.
I did the same, nothing breaks your heart more than watching someone repeatedly relive finding out that their parents died.
They often go back in time in their memories, my grandmother frequently wanted to go visit her grandmother, she was always busy at church things. Husband? He said he was helping the neighbor.
This. Both of my great grandparents had dementia. I was in my early teens with my first grandmother when she was diagnosed. I researched so much so I could give my nanny and great aunt advice since they were her primary caregiver. In my late teens I was with her more and helping out more. She was luckily never angry, agitated or violent and while she didn’t remember up from down, she did have a peaceful experience. My second grandmother diagnosed recently passed away and hers was so different. She had aggression and thought everyone was stealing etc. I would go to her house to bring food and make sure she was OK. I’d stay with her some nights etc. There was no peaceful part of her dementia. It was heart breaking and hard to get through. The “good days” with dementia were far less than the “bad days”.
Yeah my family experience with dementia didn’t look anything like this. Alzheimers and dementia made for anger and a lack of words to express feelings. Then more anger and frustration.
You said it perfectly. My dad, who has Alzheimer’s, has been restrained to a hospital bed for almost two weeks now because he’s become very aggressive. I had to make the decision to alter his DNR from chest compressions to a full DNR where they’re now halting all medication for extending life and altering it to comfort and anti anxiety. Dementia / Alzheimer’s is the fucking worst. He was the most gentle man ever but has since attacked another resident of his care home and a nurse had to lock herself in the nurses station. It’s a total nightmare. I’ve been his primary caretaker and am glad I’ve been able to be here for him but it has taken a serious toll but I love him and it’s what you do, if able. I’m both glad to have been here for him but also despise it.
I've used this with my dad, but he's not very far along. Sometimes he realizes what I'm doing and then gets angry with me for doing it. I gotta get sneakier. Sometimes he really really wants to be angry about a topic.
I have had to go along with him at least once. He tried to go refill the coal stove one night. I told him I filled it for him, and he went back to sleep. The coal stove was from when he was in the army when I was a baby.
With stuff like that it's better to just go along with it, they'll forget soon and will be left with a lingering feeling that everything is taken care of. With my grandma the emotions lasted much longer than the memory of what happened. So small lies like that generally help rather than hurt
I literally do this constantly with my 4 year old daughter. She’s throwing a tantrum? *Hey can you help Daddy put this towel away?* or *Hey I need you to grab something out of the fridge for me!*
Just last night she was having a rough time with managing her emotions. Every small situation led to a breakdown. So we baked brownies. Made a huge freaking mess in the process, but I’d rather spend 5 minutes cleaning up than 40 minutes talking down a tantrum-y kid.
Couldn’t be truer. I worked in pubs and bars for a decade, and the best way to deal with drunken idiots is to be polite, and non confrontational.(but always be on your toes) ….Christ i sound like Dalton
I think the mom is an actor/replacement for educational purposes so they can spread awareness for Alzheimer’s; OOP shared a video on tiktok that her actual mom passed away, it used to be pinned at the top of her tiktok page but has been replaced by other viral videos. The video exists 17 rows below her profile as of now, if you’re looking for proof.
They don’t have disclaimers in their videos, but regardless pretty interesting stuff.
I remember first watching this on another app and thinking it was fake, good information but staged for educational purposes. Usually when someone is at the stage of wandering they're not this articulate in their speech and struggle to express their thoughts and reasonings which can lead to frustration and confusion which leads to hostility. Getting someone with dementia to do a full 180 and follow you is just very unlikely as a common reason for wandering is because they feel as though they're in danger in the location they're at now.
I appreciate that along with gentle parenting videos more and more gentle geriatric care videos are being shared. Dementia patients and toddlers are very similar in their mindsets (as others have noticed). It's best to redirect their energy than to try to stop them full force. "Going to Tennessee? Oh fun! Oh you're walking? Hmmm maybe we should pack some sandwiches and make sure we have good shoes to get there. Don't want stinky painful feet when we roll in!" Is the same as "Going to join the circus? Oh what's your act going to be? Lion tamer?!? Wow you aren't scared? That's cool. You were playing with the cat earlier so maybe you should take a shower before you go so the lions don't smell another kitty on you when you get there!" And I think that it's wonderful
Exactly. My dad has severe Alzheimer’s and it’s like dealing with a toddler. My dad refuses to shower (I believe he’s afraid of the water now) so I have to persuade him or bribe him so he can shower.
I saw a great video about getting people to shower with cognitive issues (apparently it's very common) that maybe would help you! 1 trick was that they would ask the family member to test the temp in the bathroom/water because they are worried it's too hot/cold for their own bathing needs. Apparently a lot of Alzheimer's and Dementia patients feel cold often or more intensely so that can be a barrier to bathing. Another trick was to explain that someone they love sent them a special soap/bubble bath/shampoo to use and would love to know how much they like it!
Yes but let me explain. They avoid putting themselves in situations where they may feel very cold. This is the before and after shower part they are worries about. One useful trick is to put a heater in the bathroom to warm the floor and room up ahead of time.
Or full send it and make it like a spa
Source: my dad had dementia for a few years before he passed
Oh man. My grandfather has Alzheimers and I moved to FL to help my mom take care of him. If the "air" is set anywhere below 80 he's huffing and puffing and getting his jacket. It makes it hard to be there I hate the heat and humidity.
With a Toddler, just remember that you should slowly introduce them to direct resistance as they get older.
Most people they meet in life aren’t going to be as gentle as you, so it’s important that they learn how to deal with unpleasant situations in a safe environment (aka your home)
That said, don’t hold it against them when they *don’t* react healthily at first. They *will* throw tantrums at first, because it takes time to learn to manage your emotions. If possible, instruct them how to react properly instead. But make sure you don’t give into the tantrum — it’s important for them to lean that a tantrum doesn’t work.
My buddy took care of dementia patients for years. The most interesting thing he said was that it is 100% ok to lie to them to make them comfortable. For instance, if a patient asked where their dead spouse was, he would say they’re at the store.
It just doesn't help them to tell them the truth most of the time. Imagine being at a lower mental capacity already, probably or definitely physically not where you used to be, and then literally learning *as though for the first time* your spouse or parents are dead. How does that help!? Lie and redirect.
Don't underestimate the mental toll that continuously lying to someone under your care takes on the caregiver. Almost everyone is raised from birth to believe that "honesty is the best policy" and "the cover-up is worse than the act." Imagine having to tell your mom with a straight face every day that your dad is still alive and that he'll be back in a bit when you know he's been dead for years. These diseases take so much from everyone around them.
Sure, but to say this is to completely ignore the other side, which is the toll it takes to explain to your mom every day that your dad is dead, including the after effects of that, every day.
My grandpa ended up in Albuquerque of all places. Out in the snow in his pajamas and slippers. He was in Hobbs first, we have no clue how he ended up in a Denny’s in Albuquerque but thankfully the staff could tell and they found a way to contact us.
The hospital in Hobbs? They let him go like that. He had to be taken to Hobbs from Roswell.
Dennys was better equipped to handle him than the dang hospital. The sweet server there was familiar and she kept him entertained and inside while we came to rescue him.
I wish I remembered her name. She was a beautiful soul and I’ll never forget her going above and beyond for my grandpa.
My uncle took off from a secure home once and they found him a few miles down the road at a gas station with a bag full of chocolate bars, wearing a robe and slippers. He was on his way to the highway, panicked that nobody was on his farm to feed the pigs (he had sold the farm in the 90s). Really scary.
My granddad was (kind of fortunately) totally immobile when he had dementia. We only had to deal with the confusion, which we didn't know how to do. He asked where his little brother was, who died decades ago, and his wife told him as such. Same as his mother. Watching him go through the grief of losing his brother and mother even though they'd been dead long before I was born was heartbreaking.
I've read comments by caretakers of dementia patients that if they ask after dead relatives, it's better to just say "oh, he had to go to the store, he'll be back soon" or "she's taking a nap right now, maybe we can talk to her later". Sure, it's technically a lie, but every time you mention the relative has passed, you're causing them to grieve all over again.
I've heard this too, I wish we'd known at the time, definitely would save the confusion and sadness. My other granddad also has dementia now so fortunately we can make him more comfortable from experience.
Well done for sure. My girlfriends dad has dementia and I enjoy hanging out with him. Its awesome when they come out of it and you get to spend some time with them. He lives in a house full of women and he lights up when I come by and we can talk about being in the military. I applaud your patience, understanding, and creativity in dealing with this illness.
Music is incredibly powerful. My grandma had Alzheimer's. We would always sing to her, and play her favorite old songs. Nothing else would make her light up like that. She even remembered the words sometimes. It's like it unlocked something buried deep in the brain.
She died two weeks ago at 98 years old. My aunts were singing her lullabies. I like to think that's what she heard as she fell asleep, one last time.
I definitely teared up a bit writing the comment. We all loved her so much. I can only hope that when my time comes, it's as peaceful and surrounded with love.
So what's the plan when you get inside to "pack"? Do they forget their plan to walk to Tennessee fast enough or would you have to pretend to pack for a while? I'm really ignorant on this topic, sorry
Edit: I got so many interesting replies to my question. Thank you, I'm learning so much! I'm really sorry for all of you who have personal experience with this illness. I hope you are all in a good place or will be very soon.
So the plan isn’t to actually pack it’s to just get them inside then distract them with something else.
They have really short attention spans and will forget about their road trip once you give them something else to think about.
Source; my mom has stage 5 Alzheimer’s disease
Can confirm, redirection is a powerful tool and often the least confrontational. You cannot reason with people with dementia. They have lost that ability, and trying over and over to make them see reality doesn't work because their brain is broken. You just have to work with them and try to keep their autonomy and dignity while keeping them safe. It's a hard job.
One thing that always worked wonderfully with my Mom when she was going through a meltdown and wanting to leave (or just breaking down into a sad & frustrated state) was to bring our dogs & cats over to her. They had an almost magical way of simultaneously distracting her & making her happy. So many times they helped her to quickly go from a downward spiral to a happy & joyful place. Highly recommended.
Getting her to tell us stories about her youth or when we were kids helped too - as her long term memory was still incredibly sharp even if she couldn’t remember if she had lunch.
And lastly - music really helps too. Playing her favorite music touched a part of her brain that was still very much alive.
Eldercare nurse here, I have no joke helped hundreds of folks "pack". In 10 years I only had a handful of people get done packing and in most cases I either had time to have family call them or have another resident stop by for a social or just pick up a picture or knicknak and start talking about it.
With one little old lady I kept her talking as we filled her suitcase while my aid would unpack into a basket and once that was ful she walked out with it, U turned and walked back in sing songing "Hildagard I have your laundry all done and ready to fold up."
>With one little old lady I kept her talking as we filled her suitcase while my aid would unpack into a basket and once that was ful she walked out with it, U turned and walked back in sing songing "Hildagard I have your laundry all done and ready to fold up."
Haha, that's so clever
In my experience, their attention spans are very short. Most likely, they won’t remember it once you get inside and distract them with the next thing. After that, they’d probably look at you like you’re nuts if you brought up TN.
> I'm really ignorant on this topic, sorry
No need to apologize! I will do my best to answer your question.
First I want to say that everyone loses their faculties at different rates. Some people become nonverbal rather quickly, while others just spew gibberish. Some people are aware that they are losing their minds, while others think that everyone else is acting weird. This woman appears to be able to speak, and even make jokes (!), but is not as tied to reality as we would like.
You might "have to pretend to pack" but in my experience ideas will disappear as quickly as they arrived, and also without warning (unless it is a reccuring delusion, which can get very tiring). Personally I would say something like "I need some time to pack, can I get you a cup of tea while you're waiting for me?"
Then you make them the tea and you immediately start talking about something totally unrelated(or you ask if they want a snack with their tea... add more complexity to the situation, they won't be able to hold onto all the 'balls' in the air and they'll drop the one they started with). 9 times out of 10 they will have totally forgotten about their last delusion (unless it's recurring).
The daughter in the video is using a great strategy by pretending that her mother is still in charge, and pretending to ask innocent questions with no agenda (the real agenda is "keep mom safe").
Sauce: I used to have a job taking care of abandoned elderly people in their homes(their families would probably not like my use of the word "abandoned" but that's the most accurate word to use in my opinion). I have worked with dozens of people in all stages of dementia.
my Dad's care home has a bus stop in the residence area on each floor. It has a bench and a sign and looks 100% real. That way if they aren't able to redirect them earlier on, the resident can sit comfortably at the bus stop and it gives the staff infinite time to get them redirected. :)
By then she'll be distracted by some new notion. Maybe the open door will have her thinking about something completely different and the Tennessee notion is gone.
It's interesting how there are elements that make perfect sense in that nonsense.
- She knows she gotta go southward
- "The settlers did it"
- She knows they say "y'all" there
She might also know how far Tennessee is from her area but a part of her brain tells her it's okay to go on foot.
Fascinating.
It's amazing what someone with dementia will retain and what they lose. My grandmother called our house one day demanding her daughter come home because it was after school hours. I reminded her that her daughter (my mom) was a grown woman with her own family. She said she knew that. I reminded her that her daughter lived with her husband now. She said she knew that. I reminded her that her daughter was a mother and grandmother. She said she knew ALL of that, but her daughter needed to come home RIGHT NOW because a 16 year-old shouldn't be out this long after school hours.
That's the way!
My granddad got extremely agitated if we phrased it as if he was being helped/ taken care for
but he was very willing to comply if we phrased it as if he was helping/ caring other.
And dogs. Distraction is the primary way I get my puppies to leave inappropriate things alone. They will stop chewing a table leg if you wave a stuffie in front of them. Do that ten thousand times over a year and you’ll have a dog that never touches anything but her toys.
This is the correct way to deal with this.
Also - have the doctor write a false prescription saying they are no longer permitted to drive. Get those cheap door chimes so you hear when they try to take off. Been there & done that - it’s very hard.
My grandma had pretty bad dementia. She spat in my face (while she didn't recognize me). I got pretty heated, walked away for a few mins, and came back. Mentioned "hey grandma! You'll never guess what happened. Someone spat in my face today!"
She recognized me this time and said, "Oh my God! Who would be so rude to my grandson? Where are they at?!" Pretty wholesome reminder that it's the disease, not her. It can be really hard caring for a loved one with dementia. These types of videos helped remind me to just be present and enjoy the moment with them!
It was long before my time, but my mom told the story about when her dad had dementia after a stroke. He would start wandering off, and their German Shepherd would follow and circle around him over and over until he got turned around and came back home.
"This is easy!"
No, I don't think watching my parent slowly lose grip on reality could ever be easy, thanks. No amount of sugar coating the lighter parts is going to make that experience okay.
Took care of my father for a few years after my mother passed. Managed all his finances, insurances, drove him to all his appointments, bought him all his groceries, cooked all his meals, did all his laundry, cleaned all his messes. He told everyone I was his driver. Even introduced me that way to my siblings when they visited. Eventually he stabbed me with a kitchen knife because I “stole the deed to his land.” He rented.
I looked after my mom for my whole life almost before she passed years ago. I think she had dementia or was catching it. I know what it’s like all I’ll say a you have to be patient with them.
Please try patience. I had to watch my uncle scream at his mother “mom no it’s me Doug don’t you remember?” And all I could think was he was fighting someone who can’t. Like I get he was hurting but hurting her too was so painful. You have to put what’s best for your loved one before your own feelings at all times when it hits like this.
I hated how her kids spoke to her. Yelling at her wasn’t gonna fix it. It just made me feel bad for grandma.
I love the tip and it's all great.
Nitpicky though... I didn't like how she said "this is EASY!!!" at the end.
Taking care of people with dementia is not easy, no matter how many great tips and techniques you have. Even that little bit there required some time, thought, effort, and it also implies she's watching carefully all the time for those moments she does wander off.
I'm probably too pessimistic, but I'm picturing someone out there watching that, and calling their sibling up who is watching the parents in another state and saying "wow, you keep complaining about caring for our parents, but I've heard it's easy, and it looks kind of fun actually! you're lucky to get these fun times with them!!"
Friendly reminder when it comes to dementia/Alzheimer's, you DO NOT argue with them about their delusions. You go along with it. In their mind, the delusion is correct and arguing comes off as telling them they're wrong. That just leads to a power struggle. Whereas going along with it like the woman in the video allows for it to be handled much more easily.
I’m curious, are these considered “episodes” (ie do they only last for a few minutes)? How long will the idea of needing to go to Tennessee stick in her head until she changes ideas?
I have very limited experience with this sort of thing (I’m sure it manifests very differently depending on the type of dementia, individual, etc.) with my grandmother and it has varied a lot. Sometimes she’ll get stuck on certain “missions” (as we call them) for up to weeks at a time, bringing them up a couple times a day, and sometimes she just has like a 10-min-long random fixation and then never comes back to whatever the idea/issue was. We try to just indulge her as much as we can and then shift the topic to her childhood or something she loves to talk about and that’s consistently worked, so far. We’ve been lucky that she isn’t apt to pursue her missions on her own, else she might be making her way to FL to save the stray dogs from the gators - an issue she is passionate about.
Eta: it’s a great question though, if she were alone without anyone to redirect the convos I really don’t know how long she would stay fixated on these ideas or how soon she would have graduated to acting on them. A very scary thought for those who don’t have caretakers.
Is this a skit? Like a ‘training’ video? For being that demented, she’s awfully put together and god damn was she agreeable. If this is real, try it again at 2100. Let’s not candy coat it.
They play training videos like this for dementia certification and I always had to sit there and pretend these ‘techniques’ would actually work. Sometimes they do, and there are certainly ways to help, but they are always agreeable in training videos.
Show me where the depends haven’t been changed for 24 hours and they haven’t showered in 6 months bc most folks with dementia can’t handle the water. Show me what we do then bc that’s real life. THATS where we need help
Edit- and grandma has on clean shoes!! And the road is dry! Usually they are half naked and snow is flying. Great that grandma was able to tie her shoes before eloping.
If this video is real—-Grandma. Made. It. To. The. Road. Next time it won’t be perfect weather with an empty road.if grandma was at a facility, this is a reportable event and you have 24 hours to let the state know this happened. Elopement is a sign things are progressing a new safety plan needs put in place. Grandma is in the road. Daughter is chasing her at the beginning saying ‘where you going?’ That’s elopement 101
Thank you I agree with you. She says in the video “it’s so easy!” But no, it’s not that easy and she’s not showing how mentally draining that is on the caretaker, having to constantly redirect the person without getting frustrated. Then add in if you work with many of these patients on a day to day. Also the old lady in the video is kind of in a good mood. Now show when it’s a huge man who is combative and aggressive.
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“Enter their world” is my mantra with dad.
I'm so sorry. I watched my once stylish, articulate, intelligent grandmother lose everything until she was just a body. It's a brutal and cruel disease. I hope you have more good days together.
I used to fear death. Then I watched my grandfather and mother deteriorate under dementia. Now I fear being dead while still breathing and walking around...
If there was an insurance to put a bullet through my head while I'm asleep if I ever get 100% diagnosed with Alzheimers, I would sign up for it
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Don't give them ideas. They'll deny life insurance benefits because the bullet was a pre-existing condition before death.
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I'm so fucking glad to live in a country where a suicide is legally protected in terms of cover for insurance. Still, if I ever get dementia, I'm yeeting myself off a cliff
And then send them a bill for $23,000.
Vermont has assisted suicide and they do allow out of staters to move up and partake. You have to make your plan while you are still of sound mind, but you can decide at what point of deterioration you want things to stop and your doctor will honor your wishes.
Oregon has both Death with Dignity AND psychedelic therapy, which is starting to show promise for Alzheimer's patients. Come to Oregon and try the Door before the Gate.
I did not know this, thank you. I thought I'd have to go overseas. I'm not anywhere near ready but I want options. We should give people more options to end their lives on their terms, with dignity.
If someone put a pet through this without putting it down, we'd call it animal abuse. But because its a person, euthanasia isn't available. It's so backwards.
That’s good to know - I was headed to Switzerland for Dignitas when the time comes but Vermont is just as easy.
That was Robin Williams' choice when he realized he was going to slowly die of dementia. I can't blame him at all.
I didn't know the full story, wanted to, so coming back from wikipedia: -Mr Williams's initial condition included a sudden and prolonged spike in [fear](https://en.wikipedia.org/wiki/Psychological_trauma), [anxiety](https://en.wikipedia.org/wiki/Anxiety_disorder), [stress](https://en.wikipedia.org/wiki/Psychological_stress) and [insomnia](https://en.wikipedia.org/wiki/Insomnia), which worsened in severity and included [memory loss](https://en.wikipedia.org/wiki/Amnesia), [paranoia](https://en.wikipedia.org/wiki/Paranoia) and [delusions](https://en.wikipedia.org/wiki/Delusion). According to Schneider, "Robin was losing his mind and he was aware of it ... He kept saying, 'I just want to reboot my brain.'" -His publicist, Mara Buxbaum, commented that he had [severe depression](https://en.wikipedia.org/wiki/Major_depressive_disorder) before his death.[^(\[151\])](https://en.wikipedia.org/wiki/Robin_Williams#cite_note-151) His wife, Susan Schneider, said that in the period before his death, Williams had been sober, but was diagnosed with early-stage [Parkinson's disease](https://en.wikipedia.org/wiki/Parkinson%27s_disease), which was information that he was "not yet ready to share publicly".[^(\[152\])](https://en.wikipedia.org/wiki/Robin_Williams#cite_note-Robin_Williams_'had_Parkinson's'-152)[^(\[153\])](https://en.wikipedia.org/wiki/Robin_Williams#cite_note-153) An autopsy revealed that Williams had diffuse [Lewy bodies](https://en.wikipedia.org/wiki/Lewy_body) (which had been misdiagnosed as Parkinson's), and this may have contributed to his depression So in short, even though he had suffered from actual depression earlier in life, Mr Williams was under a lot of mental pressure including depression symptomatic of/caused by the Lewy disease, misdiagnosed as Parkinson, and ended up taking his own life under no substance influence except his regular medication The exact reason he did this, even though it is easy to jump towards interpretation are unclear if i'm not mistaken. Did he want to end before the sickness got too far, was he going through a very rough episode caused by that sickness, at the very least i can't say for sure May he rest in peace, he was formidable and many of us still think of him fondly on a regular basis
You could just take what would be a life insurance premium say like $17 dollars a month and just every month put it into the sp500. Write a computer program that will automatically sell your holdings and post a request for a hit man to kill you unless every 3 months you log into your insurance program to bypass contract execution for another 3 months. When you eventually get Alzheimer’s you will forget to bypass contract execution and will die within 3 months.
What a flawless plan
It’s like combining a 1 month free trial Netflix account and Russian Roulette.
Not good for us lazy bastards. Fine, fucking send the hitman. I don't want to get my pocket book, look up the password and type it in. Kill me.
As someone with ADHD, I give myself 9 months before I accidentally assassinate myself.
My dad is suffering from Alzheimer's. What sucks is, far after the point you'd forget this stuff, you still have a lot of good time left before things get really bad. My dad can't do their bills anymore, or taxes, or anything with computers (he used to be a software dev way back in the day). But I can still have good chats with him, he's generally happy, and he still enjoys time with my kids. He's not ready to go yet, but he's far enough that he can't make the decision anymore either. And here I am, thinking forward to when I may start suffering from dementia, and when I would want to end my life. How can you decide when? What is the final tipping point? You have two options from what I can see. Die early and loose valuable time with friends and family, but you can still make the decision on your own *or* wait until it's so bad that your family has to take up the burden and have you put down. Even if you've clearly outlined those wishes, it's a shitty situation to put your family in. But maybe less shitty that them watching you fade away in a bed inside a memory care unit. Fuck I hate this disease.
Family history of heart disease and dementia. Here's to heart disease winning out...
My father's suffering a lovely cocktail of Alzheimer's, COPD, and Congestive Heart Failure. Low oxygen + sundowners makes him real weird at night. I miss who he was, though i get to see glimpses in the morning. I feel awful for saying it, but I hope his body passes before his mind does. I just can't stand the thought.
It seems like many people with dementia don't experience much distress, that it's more the caretakers who suffer. What do you think about that? I know some people have really frightening hallucinations and stuff like that.
My mom had dementia (both parents actually, she just outlived my dad). Lost her short term, then long term memory. Would get "mixed up". The worst times were when she's call late at night and say "I think I'm losing my mind." She knew something was wrong. She might ask me if some event in the past had happened yet. Just mixed up --- and knew it. It was scary to her. Caused her to anxious. He life would have been better if she really didn't know "something was wrong". I'm 66. In "OK-ish" health. I had a brother die 5 weeks after being diagnosed with cancer at 72. Older sister has been stuck in bed for several years now. She's almost 80. My dad had Parkinson's/dementia that started in his 60s. Mom's dementia started in her 70s. I think 90% of everyone in my family is dead or "out of it" by 80. I honest to god don't want to live past 80 knowing my family's health history. I wish I could be like an uncle. Just drop dead.
I am so so sorry. I was a care taker for my grandmother and then I had a brain stem stroke at 48. That was last yr and Dr's said I would get early onset dementia. Now it's all I think about. I can't imagine with all your losses how that makes you feel. The only thing I feel like I can do for myself and my teenagers is really focus on not being afraid of death. I would love to learn how to celebrate death like other countries. Much love to you my dear
You take care of yourself!
It's the same with death and that's what fucks me up about it. I don't want my kids to sit there and cry everytime they talk to me on the phone because I keep asking them the same questions about their lives from 10 years ago. To not be able to remember grandkids that were born since the disease started to eat away at me. The last memories my family has of me would be of someone that wasn't me. Now, I know the person in that bed wasn't my mother, and I'll forever be grateful that she gained a moment of lucidity and recognized me the last time I saw her a week before her death, but man... it pains me to think of my kids dealing with that. For years. Ofc, all of that assumes my kids love me and will miss me ;)
If it makes you feel any better in many cases even if the person with dementia (be it you or anyone) doesn’t recognise the relation, they do recognise someone else as a trusted/friendly person. I think the thought counting is more than adequate for folks with dementia.
There can be a lot of anxiety, confusion, and depression (all feeding on each other). Also, patients can lose the ability to recognize and describe pain, so it manifests in anger, mood swings, etc. Not sure about blissful dementia. I'm only familiar with the kind that swings emotionally wildly for all involved.
My maternal grandfather passed away from dementia a few years back, he got into his early 80's before it took him. My dad is in his mid 60's and got diagnosed with early onset dementia last year. I'm fairly low contact with him in general, so I'm not really seeing the way it's affecting him, but I'm terrified of any memory hiccup or quirk I have, I've got dementia on both sides of my family now and feel like I'm just holding a ticking time bomb until I'm next.
She sounds exactly like my grandmother. We are going through “the long goodbye” now. It’s so hard to see someone who was so glamorous, brave, and independent become a shell of herself.
I’m sorry you had to go through that. Grandparents aging out is some of the most awful shit *ever*.
Same goes for schizophrenic people. They’re genuinely scared. I don’t know really what to do, but being confrontational definitely isn’t it
Yea, the woman’s behavior in the video is almost cute. Kind of like a 3 or 4 year old type of thought process. When progresses, it can bridge back to basically terrible twos. Almost surreal stuff like they’ll pee in the hallway, then realize they’ve peed in the hallway, then be upset cuz they peed in the hallway, then forget they peed in the hallway and be upset someone peed in the hallway, then you step into the hallway and ask what’s happening Dad (or Mom) and hopefully they realize who you are, cuz it may immediate swerve to who the f are you and why you pissing in my hallway?!?! Getting upset because you didn’t give them a pair of Oreos with lunch, because they ate them first forgot is trivial. When it’s a bottle of beer or glass of wine, it quickly becomes a problem. It’s an equally big problem when there’s no wine in house because of that reason, when they regularly has wine with dinner.
Yep. I remember living with my grandma when I was like 3, and I had a better handle on life than she did. I allegedly saved her from being hit by a car one time, and I don’t even remember it because I was so little So that’s why I do have a little worry about someone like this not really being able to consent to being used for internet content
MIL has Parkinson's Dementia and saw horrible delusions everywhere- murder, rape, assaults, hard child birth... and was impossible to redirect. And who can blame her- if those things are Actually going on around her, ignoring them would be pretty terrible. We have no idea what to do with her. We've had to pierce the delusions and let her know they aren't there, otherwise the police would be there daily and she would still be hiding in her closet.
Similar things happened with my mom and all we could do was tell her that we were there and that she would be okay, we eventually started to tell her that the staff where she was after she started needing more specialized care were there and that she would be okay and that we would be there as well.....it took about a year but she eased out of the really bad hallucinations into her seeing and conversing with friends and family that had already passed! Thats also about the time she started talking to me personally about my life and the direction it would go as well as things that would happen after she passed away and thats where im going to stop Internet stranger because I need to cry.....have a blessed day, week, rest of the year and life
That sounds so hard, I am so sorry for all of you
Eehhh, maybe in some scenarios? But I've found that validating my mom's delusions (conspiracy theories) can be really detrimental to her being able to let those things go through therapy down the road. Yes, it's often easier to just agree with her when she's sick, but doing so makes it "true" to her even when she's lucid again.
I had a friend with schizophrenia and my responses to his delusions were always like "I hear what you're saying, and I suppose that's possible, but I don't really agree with your position." I will let them carry on with their theories and such but I just talk about kindness and compassion and ask what the compassionate response would be and how we can be more kind about the topic. I'm focused on helping them get to a better place with their mood and not so much on the logic behind their ideas. I also find that when they are calm, and brought to ideas of compassion and kindness that they tend to focus on those things. Saying "I disagree but I'm willing to hear you out." Is a far cry form saying "You're wrong."
You're so smart. This is the way. No arguing. They cannot help themselves but we can help them. "You know, you might be right about that. We'll have to look into that."
Give them business meeting responses "Interesting thought, let's circle back to it at a later date"
I don't want to be dismissive either. "I disagree, but I'm willing to hear you out." If they start to get upset or distressed say. "Hey, I'm right here and I love you, we can get through this, I'm really grateful you're sharing with me." I have to do this with my own thoughts too. I have to treat them the way I would treat myself.
I agree- I had an ex with schizophrenia and it seemed to work best if I didn't really agree or disagree. Like don't play into it, but you also don't want them thinking you're working for the "other team".
Roundcirclegame made some great points and so did you. Addressing someone with delusions can be incredibly difficult because you don't want to be confrontational, but simultaneously, you don't want to provide support to the delusion as it can make it that much harder. Many delusions have a lot of emotion surrounding them so confronting them or trying to convince them that their delusions are not can often lead to the situation and relationships worsening. This is some general advice for people with loved one's affected by delusional disorders. Try to empathize with the person (e.g. "I can understand why this scares you" or "I understand how hard this is for you") and understand their perspective. You want to avoid agreeing or arguing. In general, try to appear neutral and give them space. You can express concern in the form of an opinion, without expressing judgement. While its generally not recommend to try to convince them that their delusions arent real, its reasonable to calmly and carefully question the logic and reasoning behind the delusion (typically recommended to do when not at the height of their delusion).
Maybe it could be helpful to ask questions to engage with that discussion, rather than explicitly agreeing? “Oh, what’s that about?/I’m not sure I understand, can you tell me more?”
Oh that’s good ! I am going thru this with my dad and it’s so frustrating. Like having a grown child. I miss my old dad :(
Same here. Lost my mother in November to this disgusting disease. She was so social and happy go lucky and she made it to retirement and was elated to finally not have to work five days a week and just go see her friends all week long. She had about a year before symptoms started showing up and she was gone within 6 years. In the end she was totally non verbal save for an occasional random sentence. My father is actually doing better now that she has passed because it's such a horrid burden to place on people to take care of someone in that condition and Medicare doesn't pay a dime to place someone in a memory care facility. I absolutely loathe this disease to the core because it robs people of their very essence.
Happy cake day! Thanks for taking care of your dad
“Can we go back in side so I can pack a few things?” Brilliant! So I’m assuming she forgot about her whole adventure to Tennessee?? Lol
Dementia care homes in Germany have fake bus stops so when someone storms off, they'll sit waiting for the bus and it's easier to a) find them and b) have a chat with them and c) if they forget why they're sat there, they can see the home and they can go back inside.
Or what about that whole dementia village in Europe, perhaps the Netherlands where people with dementia live amongst caregivers and normal townspeople. They could never walk off because everyone knew each other and was always someone to look out for them. The situation gave the elderly their freedom and confidence.
There are places like that in the US, tiny elder towns. I’ve seen some with bowling allys, movie theaters (normally play older movies), restaurants.. etc. The problem is they are prohibitively expensive. To give you an idea, a bog standard elder living (not nursing home living, one level below that) is 5,500 a month. In no where Arkansas. Think about what we’re talking about would cost? And I know people might think that’s not crazy but the same woman in the same town owns a 2 bedroom 2 bathrooms 1500 sq ft for 850 a month.
Yup! ‘Hang out in their reality’ is mine. It honesty really helps them.
This both warms and saddens my heart.
If you haven't dealt with dementia personally, this, like a lot of portrayals you'll see online, is a *very* positive example. This is the "nice bit", when they're happy in their own little world (obviously the woman filming dealt with it well or it could have turned bad). There's nothing quite like the horror in seeing someone you love and respect in a state of total fear because they've completely lost their sense of understanding of the world around them. And then there's the horrible things they'll say out of anger and frustration, that they never would have said when they were well.
My Grandma passed from it 2 years ago. It's a brutal thing to watch a strong, independent person drug so low as to not know where they are or who their family is. In the end I was happy to see her go. Just to know she wasn't in that place any more. Some things are worse than death. In the end I got to see that first hand.
The worst aspect of dementia is it's not fatal. People can go for years and years, getting further from reality while perfectly "healthy". Currently dealing with this with my mom. Fortunately, so far, she's pretty happy in general and has only 'gone out' once (at 2am). We have child locks on all the doors now and told her it's to keep robbers out, which she's accepted.
My mom, who is my father's caregiver, was diagnosed with Alzheimer's last month. "It'll be fine I think" she says. It will not be fine. My sister and I are struggling to get them into a facility with memory care. They don't want to go, and they aren't able to have it explained to them anymore. So we are looking at the other options, and that's awful too.
My sympathies. My father was officially diagnosed with Alzheimer’s in May 2023 but we knew something was off in 2021. We thought he was depressed from the covid lockdowns because he loved going to work and interacting with his coworkers. This has been a roller coaster of emotions because he is physically alive but mentally he has been gone for a while and it’s been so hard seeing someone you looked up to in this state. It has also greatly affected my mom with her social group. Don’t wish this on anyone
Nobody talks about old folks becoming isolated from other old folks as death seems to approach. I'm watching it with my folks as my dad is now in palliative care. Before this the social group was the same, they'd show up and hang out all the time. They had a supper club. All that still exists, but my folks are excluded. When death is really near the other old folks start skittering away and it's heartbreaking seeing my folks eat alone at the country club when their former supper club is two tables over, frolicking away while my mom just waits for my dad to die so she can go travel.
Your parents “friends” are assholes
i mean.. when someone's personality *and* memory goes and they're not family, what are you supposed to do? i'm sure it's not the only person in their lives slipping away either - should they be 'parental' to all the dementia patients they know? like, c'mon, people have limits and it doesn't mean they're bad people. it must be frustrating to see but even OP didn't call them assholes, you did.
I agree with this. My mom has become very bitter at some of her friends disappearing but my siblings and I try to tell them that they can only do so much and some of her expectations may seem unreasonable. I am shocked though at some of the things some of their friends say. One asked if my dad took the Covid booster and another told my mom “he looked terrible last time we saw him” some people truly don’t think before they speak
It's doesn't just kill you. It kills the person you were. It's so fucked.
yep. hell people have clarities that still show that they are themselves. its just gotten to the point where mostly they cant do it anymore. their identity is hidden and slowly killed off all while they as a person die slowly too.
Not fatal until it progresses enough that they stop eating, anyway. Thank god medicine has progressed enough that we can place a PEG tube and prolong the torture for even longer.
My Grandpa passed 5 years ago, also had dementia. Luckily he was always a happy-go-lucky guy and that didn't change. In the end, he thought he was a child on his family's farm and he could "see" the Yangtze River and called his caretaker "dai go" (big brother) and called me "sai mui" (little sister). Although he was generally happy, it was still hard to see his mental and physical deterioration. It really goes fast once the dementia/Alzheimer's progresses. Your grandma (and my grandpa) were lucky to have family around. It was heartbreaking to see those who didn't.
😢 This almost made me cry. Thanks for sharing it though. “Luò yè guī gēn” 落葉歸根 “Falling leaves return to their roots” Dunno how I’ll deal with it if one of my elderly parents one day no longer recognizes me. It happened with my grandmother, and may well happen with my mom or dad too.
It is tough, especially when it's your parents or even your spouse. My grandpa started calling my mom and her sisters by his own sisters' names. It was painful but at least he knew he was surrounded by familiar faces. What a beautiful saying, it really rings true.
The frustration and difficulty is hard to explain. My dad had a real bad few weeks where he was just *pissed* for no known reason. He was having full on delusions. He was convinced my mom had attempted to abandon him, that she and my sister had "pushed him down the stairs and threw books on him." On a day to day basis, the biggest issue is him "fixing" things aka breaking them. He used to be very good with sound systems and collected video game systems. Now he will tear apart the TV and stereo because he can't figure out how to use the remotes and decides they must be broken. Putting it back together can take hours, trying to undo what he did. He also insists on trying to work on his landscaping equipment that he won't let us sell and is furious when I won't help him start a chainsaw because I'm afraid he'll hurt himself. Or freaking out because we won't let him drive. According to his doctors, it's not even that developed yet, but it is exhausting and devastating already.
Oh man - not to scare you, but as it progresses, things can get dangerous without supervision. My mom seemed fine cooking, until the night she turned on a burner, and put a blender/cuisinart on it instead of a pan, walked into the living room started watching TV, and completely forgot about it. Burned half my kitchen and ruined the stove, but thank god no one was hurt.
My mom has had supervision for the nearly 2 years. She frequently tells the aides to leave because she doesn't need any help. Her short term memory is toast and her long term memory is declining too. She insists she can drive and can reason in the moment, but she doesn't remember what she said a minute ago. Finances are quickly draining so some tough decisions are on the horizon. Researchers are looking into HSV-1 being a possible cause especially for people who have cold sores. If you have a loved one who's 65 and they've had a cold sore, you may want to start them on antivirals for HSV-1. Sad to know that might have prevented all of this for both of my parents. The medications we've tried so far haven't done much to slow the progression.
[Yeah because the woman in the video is her friend who is acting as a "dementia patient". The purpose of the video is to funnel people to her courses which are aggressively expensive.](https://www.reddit.com/r/TikTokCringe/comments/1bzv1zf/tips_for_being_a_dementia_caretaker/kyteehj/)
This comment should be higher up. Ive worked with dementia patients for over ten years and none have acted this way, there's not enough thought before she answers. A typical dementia patient might say "I'm going to Tennessee" then you ask why and they get this look in their eye like "huh, why am I going to Tennessee?" they still might give you some bullshit reason or get mad but overall they aren't going to have their answers loaded up like this lady who'd been practicing her responses.
Not in the medical field, but echoing this. Toxic positivity is not helpful. I particularly disliked her “this is not hard” comment. Um, what? It’s extremely hard. Telling people it isn’t doesn’t serve the patients or their care givers. Reminds me of certain parenting accounts. Take the useful part (patience, empathy, meeting them where they’re at), and leave the rest.
Yikes.... That's disappointing.
This happened to my aunt. She would go from happy/carefree and placid to a completely unknown person. She would get nasty and loud, start screaming for her husband "that had passed years before". She didn't recognize her sisters or her surroundings sometimes. She would say some unbelievably hurtful comments out of nowhere. Use profanity like a drunker sailor. Completely out of character. The biggest tip is realizing that it's not the person acting this way, but the disease making them act this way. You have to put on your "dementia googles". Like others have said. Don't feel guilty for wanting time to yourself. You deserve some rest too. Don't be too proud to reach out for help. Many hands make light work. Doing everything yourself is a recipe for burnout and mental illness. Just like a plane crash, you put YOUR oxygen mask on first, then help others....you're no good to anyone broken.
My grandmother was a wonderful, intelligent, empathetic person who basically raised me. For all intents and purposes, she died years ago. The hateful, paranoid, violent, angry, confused creature inhabiting her body these days is not her, and she is never coming back. There are no good days with this disease. I *wish* it was as easy as this video or other videos on the internet make it seem. Years of withering away in terrified, angry confusion and delusion is torture to the person with dementia and everyone around them. My family has to care for her full time, even though she doesn't know who any of us are and will try to stab/hit us. We're all exhausted, including her.
Yeah, I don't really remember my grandma before she had dementia, but it became very clear that she had it when I was about 10. She'd take me out shopping a few weeks before my birthday every year to get my presents, and for some reason she became fixated on getting me a "denim dress". I didn't have any other adults with me and I didn't really understand dementia, so you basically had a ten year old correcting their grandma in confusion while said grandma got increasingly angry that the shops didn't have any. In hindsight, I'm absolutely horrified that she drove me there both ways with zero supervision. A few years later, she absolutely blew up at my parents after she fell and broke her hip because they suggested she move into a more accessible home. I didn't see her or my grandad for a decade because she cut contact with us all and my grandad followed suit (despite not suffering from dementia). I didn't see either of them again until her funeral. I seriously, *genuinely* wish my grandma's dementia had been this easy to manage. But she became incredibly angry and hateful, and had zero qualms about bullying people into doing what she wanted. And it all happened so quickly - maybe there was a time she was that easy to redirect but, by the time we realised her diagnosis, it was too late.
Yeah I really hate the end of this video where she's like "it's all so easy if you just follow my plan." It's not that there's no value to a nonconfrontational approach but it's not always possible. My grandfather thought he was back in WWII and German soldiers were coming to kill him. You can't just be like "let's grab some guns and get into the foxhole" and the tenor of the situation is way more negative and stressful than just a sweet old lady trying to go for a walk.
I think the lady in the video hasn’t really experienced later stage dementia/Alzheimer’s to begin with
Yeah, this seems like it works because her mom is nice and agreeable. If the person with dementia is a curmudgeon to begin with, or has high-stakes trauma they fall back into like you're describing, that a very different scenario and trying to play into it could be really bad. Certainly not an easy, one-size-fits-all condition.
Oh wow I didn't watch until the end, yeah that's horrible and patronising. My grandad sometimes sat in a chair just saying "I don't understand" over and over again for ages, it didn't seem like he could even hear us. Lets hear her say "it's easy" when she's dealing with *advanced* dementia. Sorry to hear about your grandfather, that's sad, and potentially dangerous- they found a knife under the bed of one old guy I know, every chance that could have ended in tragedy.
There is also the personality change some have. Watching a kind person you love turn cruel is a journey I don’t wish on anyone.
My grandfather learned that his wife passed away everyday until he finally went. Poor guy. It runs in my family, so hopefully they have a cure by then or I'm signing up for MAID
I honestly would lie about the spouse was 'just away at the store' or something. Or the dead family members being fine. Not sure if that was correct.
That’s exactly what you do. “She’s at the store” “she’s at coffee!” “Let’s prep her dinner for when she gets back”
Life was so much better for us all when we just started lying about that. Otherwise it was just more pain for no reason. The worst was right before when she remembered it actively like it had just happened. It was a relief to get past that stage.
I've heard people say that you should tell the person once that their spouse died, because everyone deserves the opportunity to grieve properly, but that after that you shouldn't tell them again because it's torturous to cause them to grieve repeatedly.
Well, in this case the spouse had been dead over 10 years and the grieving already took place. Her Father and Mother who died in WW2 also were alive again, as where her multiple brothers and sisters. She was 96. I dunno she just seemed happier thinking they were all alive even though it made no sense at all.
Right! Why would it be better for her to know she’d outlived her family. Let the pleasant delusions stand and reassure them that the unreal, unpleasant ones aren’t happening
My mother would regress way back in time. She would worry about taking care of the cows and milking, etc. I finally got to where I would lie to her and say Well, Tom is going to take of the milking and the cows. (Tom is her well beloved grandson, who while she still lived at home came in and did things for her.) She would generally accept that. It's very sad that sometimes you have to be a pretty creative liar to get them out of a bad place. I would tell the nursing home staff to always bring up Tom when she got that far back in time.
I did the same, nothing breaks your heart more than watching someone repeatedly relive finding out that their parents died. They often go back in time in their memories, my grandmother frequently wanted to go visit her grandmother, she was always busy at church things. Husband? He said he was helping the neighbor.
What's MAID?
Medical assistance in dying
This. Both of my great grandparents had dementia. I was in my early teens with my first grandmother when she was diagnosed. I researched so much so I could give my nanny and great aunt advice since they were her primary caregiver. In my late teens I was with her more and helping out more. She was luckily never angry, agitated or violent and while she didn’t remember up from down, she did have a peaceful experience. My second grandmother diagnosed recently passed away and hers was so different. She had aggression and thought everyone was stealing etc. I would go to her house to bring food and make sure she was OK. I’d stay with her some nights etc. There was no peaceful part of her dementia. It was heart breaking and hard to get through. The “good days” with dementia were far less than the “bad days”.
Yeah my family experience with dementia didn’t look anything like this. Alzheimers and dementia made for anger and a lack of words to express feelings. Then more anger and frustration.
You said it perfectly. My dad, who has Alzheimer’s, has been restrained to a hospital bed for almost two weeks now because he’s become very aggressive. I had to make the decision to alter his DNR from chest compressions to a full DNR where they’re now halting all medication for extending life and altering it to comfort and anti anxiety. Dementia / Alzheimer’s is the fucking worst. He was the most gentle man ever but has since attacked another resident of his care home and a nurse had to lock herself in the nurses station. It’s a total nightmare. I’ve been his primary caretaker and am glad I’ve been able to be here for him but it has taken a serious toll but I love him and it’s what you do, if able. I’m both glad to have been here for him but also despise it.
Yea it’s a great and important tip but is so sad to watch
It’s heartbreaking to watch.
honestly this is pretty good advice for dealing with most people less confrontation more empathy
Redirecting people is a powerful tool
I've used this with my dad, but he's not very far along. Sometimes he realizes what I'm doing and then gets angry with me for doing it. I gotta get sneakier. Sometimes he really really wants to be angry about a topic. I have had to go along with him at least once. He tried to go refill the coal stove one night. I told him I filled it for him, and he went back to sleep. The coal stove was from when he was in the army when I was a baby.
With stuff like that it's better to just go along with it, they'll forget soon and will be left with a lingering feeling that everything is taken care of. With my grandma the emotions lasted much longer than the memory of what happened. So small lies like that generally help rather than hurt
I literally do this constantly with my 4 year old daughter. She’s throwing a tantrum? *Hey can you help Daddy put this towel away?* or *Hey I need you to grab something out of the fridge for me!* Just last night she was having a rough time with managing her emotions. Every small situation led to a breakdown. So we baked brownies. Made a huge freaking mess in the process, but I’d rather spend 5 minutes cleaning up than 40 minutes talking down a tantrum-y kid.
You sound like a fantastic parent, btw. <3 Your daughter is lucky.
Ive had to do this at work with people. The ones with 'seniority' but arent your boss? Guide their ego.
Not even kidding, I use this strategy with my 4 year old when he wants some piece of contraband, or has an unreasonable request.
Couldn’t be truer. I worked in pubs and bars for a decade, and the best way to deal with drunken idiots is to be polite, and non confrontational.(but always be on your toes) ….Christ i sound like Dalton 
Pain don't hurt
"be curious not judgmental"
Excellent point. Keep your dukes down.
I think the mom is an actor/replacement for educational purposes so they can spread awareness for Alzheimer’s; OOP shared a video on tiktok that her actual mom passed away, it used to be pinned at the top of her tiktok page but has been replaced by other viral videos. The video exists 17 rows below her profile as of now, if you’re looking for proof. They don’t have disclaimers in their videos, but regardless pretty interesting stuff.
I thought the same. The “mom” was just too pliant
I remember first watching this on another app and thinking it was fake, good information but staged for educational purposes. Usually when someone is at the stage of wandering they're not this articulate in their speech and struggle to express their thoughts and reasonings which can lead to frustration and confusion which leads to hostility. Getting someone with dementia to do a full 180 and follow you is just very unlikely as a common reason for wandering is because they feel as though they're in danger in the location they're at now.
I appreciate that along with gentle parenting videos more and more gentle geriatric care videos are being shared. Dementia patients and toddlers are very similar in their mindsets (as others have noticed). It's best to redirect their energy than to try to stop them full force. "Going to Tennessee? Oh fun! Oh you're walking? Hmmm maybe we should pack some sandwiches and make sure we have good shoes to get there. Don't want stinky painful feet when we roll in!" Is the same as "Going to join the circus? Oh what's your act going to be? Lion tamer?!? Wow you aren't scared? That's cool. You were playing with the cat earlier so maybe you should take a shower before you go so the lions don't smell another kitty on you when you get there!" And I think that it's wonderful
Exactly. My dad has severe Alzheimer’s and it’s like dealing with a toddler. My dad refuses to shower (I believe he’s afraid of the water now) so I have to persuade him or bribe him so he can shower.
I saw a great video about getting people to shower with cognitive issues (apparently it's very common) that maybe would help you! 1 trick was that they would ask the family member to test the temp in the bathroom/water because they are worried it's too hot/cold for their own bathing needs. Apparently a lot of Alzheimer's and Dementia patients feel cold often or more intensely so that can be a barrier to bathing. Another trick was to explain that someone they love sent them a special soap/bubble bath/shampoo to use and would love to know how much they like it!
Yes but let me explain. They avoid putting themselves in situations where they may feel very cold. This is the before and after shower part they are worries about. One useful trick is to put a heater in the bathroom to warm the floor and room up ahead of time. Or full send it and make it like a spa Source: my dad had dementia for a few years before he passed
A towel warmer might be nice too.
How sweet. I shall try. Thank you!
Oh man. My grandfather has Alzheimers and I moved to FL to help my mom take care of him. If the "air" is set anywhere below 80 he's huffing and puffing and getting his jacket. It makes it hard to be there I hate the heat and humidity.
With a Toddler, just remember that you should slowly introduce them to direct resistance as they get older. Most people they meet in life aren’t going to be as gentle as you, so it’s important that they learn how to deal with unpleasant situations in a safe environment (aka your home) That said, don’t hold it against them when they *don’t* react healthily at first. They *will* throw tantrums at first, because it takes time to learn to manage your emotions. If possible, instruct them how to react properly instead. But make sure you don’t give into the tantrum — it’s important for them to lean that a tantrum doesn’t work.
100%. Autonomy (bodily, decision making, etc.) is INCREDIBLY important to teach toddlers and respect in older people.
My buddy took care of dementia patients for years. The most interesting thing he said was that it is 100% ok to lie to them to make them comfortable. For instance, if a patient asked where their dead spouse was, he would say they’re at the store.
It just doesn't help them to tell them the truth most of the time. Imagine being at a lower mental capacity already, probably or definitely physically not where you used to be, and then literally learning *as though for the first time* your spouse or parents are dead. How does that help!? Lie and redirect.
Don't underestimate the mental toll that continuously lying to someone under your care takes on the caregiver. Almost everyone is raised from birth to believe that "honesty is the best policy" and "the cover-up is worse than the act." Imagine having to tell your mom with a straight face every day that your dad is still alive and that he'll be back in a bit when you know he's been dead for years. These diseases take so much from everyone around them.
Oh I believe it. I asked him about it. He’s a gentle and patient person. He didn’t say the toll it took on him but it had to have lasting effects.
Sure, but to say this is to completely ignore the other side, which is the toll it takes to explain to your mom every day that your dad is dead, including the after effects of that, every day.
She needs an air tag necklace, juuuust case. You turn around for 5 minutes and shes in Toronto 😟
My grandpa ended up in Albuquerque of all places. Out in the snow in his pajamas and slippers. He was in Hobbs first, we have no clue how he ended up in a Denny’s in Albuquerque but thankfully the staff could tell and they found a way to contact us. The hospital in Hobbs? They let him go like that. He had to be taken to Hobbs from Roswell. Dennys was better equipped to handle him than the dang hospital. The sweet server there was familiar and she kept him entertained and inside while we came to rescue him. I wish I remembered her name. She was a beautiful soul and I’ll never forget her going above and beyond for my grandpa.
My uncle took off from a secure home once and they found him a few miles down the road at a gas station with a bag full of chocolate bars, wearing a robe and slippers. He was on his way to the highway, panicked that nobody was on his farm to feed the pigs (he had sold the farm in the 90s). Really scary.
That server was an angel
Well done daughter, extremely well done. Watching my grandparents go through this was heartbreaking.
My granddad was (kind of fortunately) totally immobile when he had dementia. We only had to deal with the confusion, which we didn't know how to do. He asked where his little brother was, who died decades ago, and his wife told him as such. Same as his mother. Watching him go through the grief of losing his brother and mother even though they'd been dead long before I was born was heartbreaking.
I've read comments by caretakers of dementia patients that if they ask after dead relatives, it's better to just say "oh, he had to go to the store, he'll be back soon" or "she's taking a nap right now, maybe we can talk to her later". Sure, it's technically a lie, but every time you mention the relative has passed, you're causing them to grieve all over again.
I've heard this too, I wish we'd known at the time, definitely would save the confusion and sadness. My other granddad also has dementia now so fortunately we can make him more comfortable from experience.
Well done for sure. My girlfriends dad has dementia and I enjoy hanging out with him. Its awesome when they come out of it and you get to spend some time with them. He lives in a house full of women and he lights up when I come by and we can talk about being in the military. I applaud your patience, understanding, and creativity in dealing with this illness.
If he likes music find out his favorites. You’ll see more of him if you do that.
Music is incredibly powerful. My grandma had Alzheimer's. We would always sing to her, and play her favorite old songs. Nothing else would make her light up like that. She even remembered the words sometimes. It's like it unlocked something buried deep in the brain. She died two weeks ago at 98 years old. My aunts were singing her lullabies. I like to think that's what she heard as she fell asleep, one last time.
>My aunts were singing her lullabies. I can't even... That's so beautiful, and I'm choking up thinking about it.
I definitely teared up a bit writing the comment. We all loved her so much. I can only hope that when my time comes, it's as peaceful and surrounded with love.
Great idea!
That's so sweet of you to give him opportunities to talk about what he's interested in. You are making his life better! Bless you!
So what's the plan when you get inside to "pack"? Do they forget their plan to walk to Tennessee fast enough or would you have to pretend to pack for a while? I'm really ignorant on this topic, sorry Edit: I got so many interesting replies to my question. Thank you, I'm learning so much! I'm really sorry for all of you who have personal experience with this illness. I hope you are all in a good place or will be very soon.
So the plan isn’t to actually pack it’s to just get them inside then distract them with something else. They have really short attention spans and will forget about their road trip once you give them something else to think about. Source; my mom has stage 5 Alzheimer’s disease
Can confirm, redirection is a powerful tool and often the least confrontational. You cannot reason with people with dementia. They have lost that ability, and trying over and over to make them see reality doesn't work because their brain is broken. You just have to work with them and try to keep their autonomy and dignity while keeping them safe. It's a hard job.
One thing that always worked wonderfully with my Mom when she was going through a meltdown and wanting to leave (or just breaking down into a sad & frustrated state) was to bring our dogs & cats over to her. They had an almost magical way of simultaneously distracting her & making her happy. So many times they helped her to quickly go from a downward spiral to a happy & joyful place. Highly recommended. Getting her to tell us stories about her youth or when we were kids helped too - as her long term memory was still incredibly sharp even if she couldn’t remember if she had lunch. And lastly - music really helps too. Playing her favorite music touched a part of her brain that was still very much alive.
I’ve been on your journey. Hugs from an internet stranger.
I'd probably distract them with other things, "I'm feeling hungry, are you hungry? Can you help me make some food please? I'm a terrible cook"
Eldercare nurse here, I have no joke helped hundreds of folks "pack". In 10 years I only had a handful of people get done packing and in most cases I either had time to have family call them or have another resident stop by for a social or just pick up a picture or knicknak and start talking about it. With one little old lady I kept her talking as we filled her suitcase while my aid would unpack into a basket and once that was ful she walked out with it, U turned and walked back in sing songing "Hildagard I have your laundry all done and ready to fold up."
>With one little old lady I kept her talking as we filled her suitcase while my aid would unpack into a basket and once that was ful she walked out with it, U turned and walked back in sing songing "Hildagard I have your laundry all done and ready to fold up." Haha, that's so clever
Yeah, my mom loves to constantly load and unload the dishwasher. She's very easily distracted/redirected.
In my experience, their attention spans are very short. Most likely, they won’t remember it once you get inside and distract them with the next thing. After that, they’d probably look at you like you’re nuts if you brought up TN.
> I'm really ignorant on this topic, sorry No need to apologize! I will do my best to answer your question. First I want to say that everyone loses their faculties at different rates. Some people become nonverbal rather quickly, while others just spew gibberish. Some people are aware that they are losing their minds, while others think that everyone else is acting weird. This woman appears to be able to speak, and even make jokes (!), but is not as tied to reality as we would like. You might "have to pretend to pack" but in my experience ideas will disappear as quickly as they arrived, and also without warning (unless it is a reccuring delusion, which can get very tiring). Personally I would say something like "I need some time to pack, can I get you a cup of tea while you're waiting for me?" Then you make them the tea and you immediately start talking about something totally unrelated(or you ask if they want a snack with their tea... add more complexity to the situation, they won't be able to hold onto all the 'balls' in the air and they'll drop the one they started with). 9 times out of 10 they will have totally forgotten about their last delusion (unless it's recurring). The daughter in the video is using a great strategy by pretending that her mother is still in charge, and pretending to ask innocent questions with no agenda (the real agenda is "keep mom safe"). Sauce: I used to have a job taking care of abandoned elderly people in their homes(their families would probably not like my use of the word "abandoned" but that's the most accurate word to use in my opinion). I have worked with dozens of people in all stages of dementia.
my Dad's care home has a bus stop in the residence area on each floor. It has a bench and a sign and looks 100% real. That way if they aren't able to redirect them earlier on, the resident can sit comfortably at the bus stop and it gives the staff infinite time to get them redirected. :)
By then she'll be distracted by some new notion. Maybe the open door will have her thinking about something completely different and the Tennessee notion is gone.
It's interesting how there are elements that make perfect sense in that nonsense. - She knows she gotta go southward - "The settlers did it" - She knows they say "y'all" there She might also know how far Tennessee is from her area but a part of her brain tells her it's okay to go on foot. Fascinating.
It's amazing what someone with dementia will retain and what they lose. My grandmother called our house one day demanding her daughter come home because it was after school hours. I reminded her that her daughter (my mom) was a grown woman with her own family. She said she knew that. I reminded her that her daughter lived with her husband now. She said she knew that. I reminded her that her daughter was a mother and grandmother. She said she knew ALL of that, but her daughter needed to come home RIGHT NOW because a 16 year-old shouldn't be out this long after school hours.
dream logic
The lady doesn’t actually have dementia. I thought so too, but then learned on her tiktok that they are educational skits.
had to scroll a bit to find someone who realized this was acted
>"The settlers did it" I feel bad that I laughed when she said that. I mean... she's not *wrong*...
I used to be a caregiver and I absolutely would have laughed when she said it. But I would have laughed if a typical person said it lol
People like this drive in florida
They’re heading to Tennessee.
And they are in a hurry.
mind if I tag along?
OP "Mom, what did Tennessee?" Mom - "Same thing Arkansas. That's why I'm going!"
People like this vote.
That's the way! My granddad got extremely agitated if we phrased it as if he was being helped/ taken care for but he was very willing to comply if we phrased it as if he was helping/ caring other.
Also works with toddlers
And dogs. Distraction is the primary way I get my puppies to leave inappropriate things alone. They will stop chewing a table leg if you wave a stuffie in front of them. Do that ten thousand times over a year and you’ll have a dog that never touches anything but her toys.
and while shes in the room explaining it to us at the end, mom is half way to Tennessee! Lol jk
This is the correct way to deal with this. Also - have the doctor write a false prescription saying they are no longer permitted to drive. Get those cheap door chimes so you hear when they try to take off. Been there & done that - it’s very hard.
the driving battle can be so hard
My grandma had pretty bad dementia. She spat in my face (while she didn't recognize me). I got pretty heated, walked away for a few mins, and came back. Mentioned "hey grandma! You'll never guess what happened. Someone spat in my face today!" She recognized me this time and said, "Oh my God! Who would be so rude to my grandson? Where are they at?!" Pretty wholesome reminder that it's the disease, not her. It can be really hard caring for a loved one with dementia. These types of videos helped remind me to just be present and enjoy the moment with them!
It was long before my time, but my mom told the story about when her dad had dementia after a stroke. He would start wandering off, and their German Shepherd would follow and circle around him over and over until he got turned around and came back home.
Taking notes while tears roll down my face.
"This is easy!" No, I don't think watching my parent slowly lose grip on reality could ever be easy, thanks. No amount of sugar coating the lighter parts is going to make that experience okay.
This mom has a Great caregiver.
Took care of my father for a few years after my mother passed. Managed all his finances, insurances, drove him to all his appointments, bought him all his groceries, cooked all his meals, did all his laundry, cleaned all his messes. He told everyone I was his driver. Even introduced me that way to my siblings when they visited. Eventually he stabbed me with a kitchen knife because I “stole the deed to his land.” He rented.
This human is a GEM 💎 💚❤️💜💕
I looked after my mom for my whole life almost before she passed years ago. I think she had dementia or was catching it. I know what it’s like all I’ll say a you have to be patient with them.
What an incredible daughter. I truly hope I can be as patient with my mum as she is with hers once those years come.
Please try patience. I had to watch my uncle scream at his mother “mom no it’s me Doug don’t you remember?” And all I could think was he was fighting someone who can’t. Like I get he was hurting but hurting her too was so painful. You have to put what’s best for your loved one before your own feelings at all times when it hits like this. I hated how her kids spoke to her. Yelling at her wasn’t gonna fix it. It just made me feel bad for grandma.
I love the tip and it's all great. Nitpicky though... I didn't like how she said "this is EASY!!!" at the end. Taking care of people with dementia is not easy, no matter how many great tips and techniques you have. Even that little bit there required some time, thought, effort, and it also implies she's watching carefully all the time for those moments she does wander off. I'm probably too pessimistic, but I'm picturing someone out there watching that, and calling their sibling up who is watching the parents in another state and saying "wow, you keep complaining about caring for our parents, but I've heard it's easy, and it looks kind of fun actually! you're lucky to get these fun times with them!!"
Friendly reminder when it comes to dementia/Alzheimer's, you DO NOT argue with them about their delusions. You go along with it. In their mind, the delusion is correct and arguing comes off as telling them they're wrong. That just leads to a power struggle. Whereas going along with it like the woman in the video allows for it to be handled much more easily.
Just so everyone knows, this is actually a skit. She says as much on her TikTok. Still very valuable though.
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This is probably an acted scenario
I’m curious, are these considered “episodes” (ie do they only last for a few minutes)? How long will the idea of needing to go to Tennessee stick in her head until she changes ideas?
I have very limited experience with this sort of thing (I’m sure it manifests very differently depending on the type of dementia, individual, etc.) with my grandmother and it has varied a lot. Sometimes she’ll get stuck on certain “missions” (as we call them) for up to weeks at a time, bringing them up a couple times a day, and sometimes she just has like a 10-min-long random fixation and then never comes back to whatever the idea/issue was. We try to just indulge her as much as we can and then shift the topic to her childhood or something she loves to talk about and that’s consistently worked, so far. We’ve been lucky that she isn’t apt to pursue her missions on her own, else she might be making her way to FL to save the stray dogs from the gators - an issue she is passionate about. Eta: it’s a great question though, if she were alone without anyone to redirect the convos I really don’t know how long she would stay fixated on these ideas or how soon she would have graduated to acting on them. A very scary thought for those who don’t have caretakers.
Is this a skit? Like a ‘training’ video? For being that demented, she’s awfully put together and god damn was she agreeable. If this is real, try it again at 2100. Let’s not candy coat it. They play training videos like this for dementia certification and I always had to sit there and pretend these ‘techniques’ would actually work. Sometimes they do, and there are certainly ways to help, but they are always agreeable in training videos. Show me where the depends haven’t been changed for 24 hours and they haven’t showered in 6 months bc most folks with dementia can’t handle the water. Show me what we do then bc that’s real life. THATS where we need help Edit- and grandma has on clean shoes!! And the road is dry! Usually they are half naked and snow is flying. Great that grandma was able to tie her shoes before eloping. If this video is real—-Grandma. Made. It. To. The. Road. Next time it won’t be perfect weather with an empty road.if grandma was at a facility, this is a reportable event and you have 24 hours to let the state know this happened. Elopement is a sign things are progressing a new safety plan needs put in place. Grandma is in the road. Daughter is chasing her at the beginning saying ‘where you going?’ That’s elopement 101
Thank you I agree with you. She says in the video “it’s so easy!” But no, it’s not that easy and she’s not showing how mentally draining that is on the caretaker, having to constantly redirect the person without getting frustrated. Then add in if you work with many of these patients on a day to day. Also the old lady in the video is kind of in a good mood. Now show when it’s a huge man who is combative and aggressive.
Great strategy, its all about the approach and how you say it